Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

August 9, 2014

Saturday, August 9, 2014Tonight's picture was taken in August of 2009. This was Mattie's last wish... to have a ride-on car. So on August 6th, "Speedy Red" came into our lives. Mattie named the car and though he only rode it for a couple of weeks, it gave him joy for those weeks. For the first several times Mattie drove the car, I sat in the passenger seat and directed him to make sure he was safe and knew what he was doing. But in all reality, he just seemed to get the concept of a gas pedal and a brake right away! As time moved on, he wanted to drive without me in the car! That actually made me very nervous because he was connected to a pain pump and an oxygen tank most times while riding in the car! But I would give him his freedom and usually chase around on foot behind the car to make sure he was okay and that his IV lines weren't getting caught in anything.

Quote of the day: I have an idea that the only thing which makes it possible to regard this world we live in without disgust is the beauty which now and then men create out of the chaos. The pictures they paint, the music they compose, the books they write, and the lives they lead. Of all these the richest in beauty is the beautiful life. That is the perfect work of art.~ W. Somerset Maugham

Peter and I took on the project of painting our kitchen this weekend! It is the last room in our home that needs painting. We have done every other room this year. Which is a wonderful feeling! But the kitchen has been the last one on the list. In comparison to the other rooms, this one is very doable, but I have MANY things all over the walls in the kitchen. I collect tiles from all the places we visit. So each one of these tiles needed to be removed from the walls and hand washed this morning. That alone was a task! Then of course prepping the space for painting.... a task Peter took on for a good chunk of the day!

As of this evening, this is the transformation! The new color is called Apricot Flower! We have more to do tomorrow, but slowly, room by room, we are trying to transform it into a Mattie Miracle themed feeling. Which in essence has a very Tuscan feeling to it!

August 8, 2014

Friday, August 8, 2014Tonight's picture was taken on August 8 of 2009. By this point we knew that Mattie's condition was terminal. Because Mattie's cancer treatment was so intense and he never got to a point where his condition put him in a more stable physical place, he never had an opportunity to "make a wish" through the Make a Wish Foundation. This is a Foundation that grants special events, opportunities, and trips to children with a life threatening medical condition. So instead, my parents helped him with a wish in his limited condition. Mattie wanted a ride on car. Peter and I went out that day and bought the car, dragged it home, and I snapped this photo as Peter was unveiling it to Mattie! Mattie was thoroughly in love with "Speedy Red," the name Mattie gave his car. Mattie took to driving like a duck took to water. He just had a natural understanding for the mechanics of driving despite being so frail, with pain pumps and oxygen connected to him at all times. There was no keeping a good driver down!

Quote of the day: When you have really exhausted an experience you always reverence and love it. ~ Albert CamusAs I read Camus' quote tonight, I have to wonder. I know plenty of experiences that have exhausted me this summer, and I am NOT sure I love any of them! In fact, I spent seven hours at a licensure board meeting today and as I write this, I can attest to being wiped out. I came into the meeting already mentally frayed and exhausted from a summer of intense work. That is after a full year of intense Mattie Miracle work! My licensure board members today were concerned about my mental health, and if they are saying something to me, that makes me take note. Since they have never said anything to me before. But I am aware of the fact that writing book chapters is very challenging work on top of what I already balance for the Foundation. With that said, I am not writing much tonight on the blog, since I have already had quite a full day of reading, writing, and absorbing!

August 7, 2014

Thursday, August 7, 2014Tonight's picture was taken in August of 2009. By this point we already knew that Mattie's cancer was terminal. Mattie was sitting outside on our deck and what you can't see was we had a kiddie pool near his feet. In the past Mattie would have been in the pool with all of his toys, but given his weakened condition and the fact that he had IVs, he wasn't going in the water. Instead, he had his toy motor boats in the water and he put on his captain hat, because like any good captain, he wanted to let us know he was in charge of the situation at hand!Quote of the day:I think we dream so we don’t have to be apart for so long. If we’re in each other’s dreams, we can be together all the time. ~ A.A. Milne (Author of Winnie the Pooh)

Today I made significant headway on the chapter I am writing. I finished a section! For me, it felt like I climbed a mountain, even though I never left my desk chair! A rather sedentary experience!!! It is hard to see the summer go by and be stuck inside, but I continue to remain focused, and yet very tired. In the process of writing I received an email from my friend Maria. She wanted me to know about her dream last night. The funny part is I too had a strange dream last night, but I tried to put it out of my head. Maria works in our complex and she has known us since we moved into our complex years ago. She knew us before we had Mattie! Maria let me know that in her dream she was visited by Mattie. The dream had an entertaining component to it because it involved sorting change.... pennies, dimes and quarters. Why is that funny? Because Mattie LOVED change! In fact, he could find money everywhere.... on the street, in stores, on the ground. You name it! Once in a grocery store, he dove behind the check out clerk just to obtain a penny behind the register. This clerk did not know what hit her. So the fact that in Maria's dream they were sorting change was actually quite believable! As Maria's dream came to an end, Mattie told Maria to make sure she says "hi to me" from him! So a message to me through someone else! Maria wasn't sure she should tell me, because she wasn't sure if this would upset me. But Mattie messages are always something I want to hear. I think when you lose a child, there is a natural fear of how your child is doing. What exists after death? If you grew up believing in the concept of heaven, then you wonder does heaven really exist? You are left with a lot of questions and a lot of what ifs! So I appreciated the notion that perhaps Mattie really said hello to me on some level!While Maria was visited by Mattie in a dream, I was jostled awake by my own dream this morning. In my dream I was getting a phone call. When I went to answer the phone, at the other end of the line was my friend Margaret. Margaret recently died in June. Because this whole notion must have been so overwhelming I have no idea what happened after the phone rang. I literally woke right up and therefore do not know the point of the dream or what was being communicated to me. Nonetheless, I find it interesting and not necessarily a coincidence that Mattie and Margaret were channeled to me somehow today.

August 6, 2014

Wednesday, August 6, 2014Tonight's picture was taken on August 6 of 2009. The day after we found out that Mattie's case was terminal. Mattie posed for a photo next to Roxanne. Roxanne was a traveling nurse from Florida. Though she wasn't at Georgetown long, we liked Roxanne and she understood the severity of our issues right away! I was in a blur that day so frankly I have NO recollection of where Mattie got that toy boat. I do not know if he got it from the clinic, from Linda (his child life specialist), or if it was something Team Mattie gave to him. Either case, it was something that brightened his day, and no doubt he opened it up and most likely floated it in the sink by the art therapy table!

Quote of the day: The best antidote I know for worry is work. The best cure for weariness is the challenge of helping someone who is even more tired. One of the great ironies of life is this: He or she who serves almost always benefits more than he or she who is served. ~ Gordon B. HinckleyI spent the day at home either glued to the computer or the kitchen! After 18 years of faithful service, our refrigerator decided it had enough! One shelf would either freeze the food, while another shelf wouldn't keep the food cold at all. I had just about enough of that, along with seeing good food go to waste. So today, my complex replaced my refrigerator. Along with the new refrigerator, I had the pleasure of meeting John. I am sure I have run into John before, but today, we spent a lot of time together transferring refrigerators. John, is aware of Mattie, and even asked me about our October candy drive. In any case, I told John he is my Renaissance man because after helping me with the refrigerator, I had him helping me with curtains, a bathtub, and a toilet! There is no end to his talents and now that I know he exists on our property, well the possibilities are endless.

Transferring things from one refrigerator to another shouldn't be that big of a deal in theory! But it is!!! Because I have MORE things on the outside of my refrigerator than on the inside. My refrigerator tells a story. I collect magnets from each place I VISIT and of course I have Mattie's art work and other collectibles of his on the refrigerator as well. When Mattie was in preschool, he made Peter Father's day gifts (one in 2005 and one in 2006) and he made me Mother's day gifts. They are up on the refrigerator and prominently displayed. In fact, When Mattie was in Margaret's classroom, the Mother's Day gift that he made me was the colorful Popsicle stick frame that you see with a photo of him and I inside of it. It was a photo that Margaret took of us the day I came into her classroom to decorate gingerbread houses with the kids. Whereas the green Popsicle frame was the Father's Day gift Mattie made in Margaret's classroom that year. Then in the following year, when Mattie was in Kathy's preschool class, he made me the Mother's day gift next to the Statue of Liberty magnet. It looks like a picture of a girl. Well that girl is me. Underneath it is say "my mom." You maybe able to see one dot in the center of my dress, that is supposed to be my HEART! Apparently this was Mattie's idea to include my heart, because this is how he viewed me. The other drawing near that one, is entitled, "my dad," and Mattie gave that one to Peter for Father's Day in 2006. In a way I am happy I had the refrigerator as a diversion today since there have been aspects of the book chapter that have been weighing on my mind. I have a particular writing style and yet I know the audience for whom this book is intended. Therefore, I have to tailor my words and messages to fit that audience. I do not necessarily like doing this because at times it makes me feel disingenuous but then I also realize if I wanted to get my message across to people in a foreign land, I can't speak English. I would need to deliver the message in their native tongue. So I am trying to come to peace with that revelation, but it isn't an easy concept for me because the message I am delivering is not just theory. My message is personal. Well of course I am delivering research too, but mixed in the research is also an unfortunate statistic, a statistic which I am living and breathing every day (the loss of Mattie). Which is something I am quite sure separates me from the average practitioner.

August 5, 2014

Tonight's picture was taken on August 5 of 2009, the day we learned that Mattie's cancer was terminal. It is hard to believe this was five years ago today. I remember this moment in time like it were yesterday. As if it were just happening. I have reposted the story of our day below from the blog in 2009. Thank goodness for the blog, it is my memory in time! It captures pictures, stories, memories, and details! Things I would not want to forget! Details are important to me. However, one detail from August 5th 2009, I did not write about on the blog interestingly enough, which I will capture in tonight's posting instead. In fact, I checked on ALL August 5th blog postings for EVERY year I have been writing, and unfortunately I NEVER wrote about the story I will tell you tonight. At least NOT on August 5th. Since my friend Mary Ann remembers the story, I know that means I wrote about it somewhere on the blog. Nonetheless, I want it captured and tied to August 5th. So therefore I am writing it below for documentation. This photo was taken near the Hospital's rose garden which was where we went that day between scans. The hospital has an art project where nurses and staff create clay pieces and attach it to an elephant. The pieces can have inspirational words, poems, or quotes on them! Mattie was posing by a clay piece his nurse Kathleen created in his honor. It was a piece in the shape of a monkey, because he was her "monkey boy." Mattie's left leg was called "Curious George," who is a story book monkey, and Mattie's left leg was known to roam and be quite curious. Actually it was as skilled as an arm and hand! Mattie loved that clay piece and therefore wanted to take a photo by it that day (it was right by his head)!

Quote of the day: There's no tragedy in life like the death of a child. Things never get back to the way they were. ~ Dwight D. Eisenhower

For our faithful readers who reached out to us today, I thank you! CassandraI saw your message attached to the blog! We thank you for visiting Mattie's brick at Georgetown!!!!Below I reposted the blog entry I wrote on August 5 of 2009. As I reread it tonight, two things struck me about it. I asked myself back then, how does one live without one's child? What an excellent question! One never elects to live without one's child. It was something that was thrust upon me, and I have been forced to deal with it. So I have had to figure it out. I have no other choice. Life gives you two options, to find a way through it, or not. So I would say, I am still figuring it out. The second observation was I was concerned about not telling Mattie about his terminal diagnosis and his pending death. But the real newsflash is, Mattie already knew his condition. He was trying to tell me and ALL of us around him that he was very sick. He knew it for quite some time. The doctors were in left field really. They just couldn't believe that a child only six weeks off of chemotherapy could have a recurrence. Therefore they did not even want to scan him! When I said he couldn't eat or he was in pain, instead of these issues being taken seriously, I got answers like..... these are the side effects of treatment, or he is manipulating me by not eating, or he is addicted to pain meds! I got it all! It was only because I was at my wits end and I have a mouth on me, that I was able to get the scans done which revealed more tumors. I think the results stunned the medical community! This is what continues to shock me about medicine! I think doctors think that they have control over cancer! That to me is a total joke and a half. There is so much out of ANY OF OUR control and to some extent control has to put back into the hands of patients. Patients need a voice, they need to be heard! One of the stories that I distinctly remember from August 5th, which I did not write in the blog in 2009, occurred in the Hospital's rose garden. The rose garden was my safe haven. Mind you it was SMALL! I mean small. It had two benches, a little fountain, a couple of roses, and so forth. But it was a charming space, and it was somewhat removed from the actual building where the cancer treatment was taking place. On rare occasions when I would take a break, I escaped to this garden. That infamous day after the first scan, Mattie and I went to the rose garden. Mattie was very edgy because he knew something was up since he needed a CT scan as a result of something that was found in his ultrasound.I pushed Mattie's wheelchair into the rose garden and I sat on bench. We both looked at the fountain and the roses for a while. But Mattie wasn't happy with that, instead he wanted to get out of the chair and sit in my lap. Mattie could hardly move at that point, so literally I had to scoop him up like a baby. Yet he was not a baby, he was seven years old, a bag of bones in a way (emaciated from cancer treatment), full of pain, and had been through an ordeal no one should have had to live through. Once he was in my lap, he just did not sit there, he kind of burrowed in looking for safety, comfort, and protection. It was in my lap that Mattie asked to hear the story of the day he was born. But it was the way he asked me. It was as if he was asking me because he wanted to be reminded for many reasons...... that he was my baby, that he did not want to forget the story, and in many ways, it seemed like he was asking because he thought as if he was never going to be able to hear the story again! I felt as if he wanted to hear the story because he was bracing himself for a great tragedy and he needed to hear this story to help ground and prepare himself. It may sound strange given that Mattie was only seven, but if you were in this moment with me, you would understand the depths of how unbelievable and tender that moment was for both of us. Which maybe why I couldn't process it or write about it on August 5, 2009. But I remember it very well even today. It was a haunting moment in time. While Mattie sat in my lap I relived the story about the night I went into labor, my c-section, and the fact that I was the first one to touch his toes after he was born. Mattie loved when I tried to replicate the sound I heard coming from him when they pulled him from my body! A very large
WAAHHH! WAAHHH! The sound itself always made Mattie LAUGH!!! We needed that laughter that day. When I think about August 5, 2009, I naturally think of Mattie's terminal diagnosis day, but I also think about the Hospital rose garden and that tender moment he was in my lap! It is a moment and memory that is captured ONLY in my mind that none of you ever knew about, but it happened, it was special, and just like Mattie I believe it showed the insights and depths he had about his own situation and his own mortality. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~From the BLOG on August 5, 2009:

Tonight, I write with a heavy heart to let you know that
Mattie's fight is coming to an end. We learned today, after I insisted on an
ultrasound and an abdominal CT scan, that Mattie's cancer has spread back to
his lungs, as well as his liver and stomach. It is everywhere! This is a fast
moving disease in Mattie, because you will remember he had a sternotomy in
June, and every known osteo lung tumor was removed at that point. Almost two
months later, there are tumors everywhere.

Mattie has been complaining of stomach pain since May. In May,
we started running tests for an ulcer, but as many of you know, we did not get
the test results back until last week. Part of me wishes we did an ultrasound
and abdominal CT scan in May, but then again, that most likely wouldn't have
changed the outcome of things. One thing is certain though, I know my son. I
stuck to my convictions that something medically was wrong with Mattie and that
this was the explanation for him not eating and drinking. This wasn't a
psychological issue, and I knew this in my heart of hearts. Clearly today,
medical science confirmed what a mother's love knew all along. I just wish
medical doctors would listen to us more often! When I called the hospital this
morning, they told me they couldn't fit Mattie in today for testing, so I
booked an ultrasound for Friday. Then Ann called me and she asked me in a nice
way, what I was doing about this scheduling issue? I am not sure if I gave up
the will to fight or was just exhausted, since I would have challenged this
testing delay in the past. But the more I thought about what Ann was saying,
the more I realized I had to mobilize forces and advocate once again to get
this testing done today. Thank you Ann for the courage and support to do the
right thing.

I also want to acknowledge Linda (Mattie's child life
specialist) today. She helped me every step of the way, getting the ultrasound
and CT scans done, quickly and timely. After all I did not have appointments
for either, we were add ons. But Linda can make anything happen at the
hospital, and I can't say enough about how much she means to us.

Today, I fought every step of the way to make sure Mattie not
only received an ultrasound, but a CT scan. Mattie's doctors did not feel he
needed both, of course, until a large mass was spotted in the ultrasound. So in
essence Mattie went through an ultrasound (smoothly thanks to Linda, and his DS
player - something he never plays with, but it caught his attention today) first.
I started getting very edgy during the ultrasound, because the tech asked Linda
what type of cancer Mattie had. I thought that was a telling question to ask
during the test and this prompted my immediate attention and concern. I
couldn't shake that question all afternoon. After the ultrasound, Mattie and I
sat outside the hospital in the rose garden and had lunch. Normally Mattie
doesn't want to sit still, but today was different. He had me telling stories
about his baby years. I retold the story of how he was born, how he learned to
sleep, walk, and talk. None of these things came easy to Mattie, but he learned
them, and through these struggles, Mattie and I became very close. When my mom
describes Mattie as an extension of me, she isn't kidding! This is a fair
assessment! The conversation in the garden today was so special, loving, and
priceless moment between us, which I will never forget. Unfortunately this
moment, was disturbed when the doctor called to tell me she saw a mass in
Mattie's liver, and would need to do a CT scan.

Mattie seemed concerned that he had to take an unscheduled CT
scan later this afternoon. He had to drink a contract dye, and then also had to
have one injected through his central line. The prospect of the injected dye
sent Mattie into a state of anxiety. He did not want to do the test, and it
took a great deal of effort and calmness to talk him through the process. Peter
left work today, so he was with me, and Linda also came to provide assistance.
Linda is great at managing the techs, who clearly need managing. This tech had
no empathy or understanding for what Mattie has and continues to go through.
She was in fact annoyed that he wasn't complying with her instructions. Linda
removed the tech from the room, and I basically had to give Mattie a pep talk
so that he would tolerate the test. I told him I knew he was scared, that he
did not want to go through the CT scan, but I had confidence he could do it. I
told him there is nothing he can't do if he puts his mind to it. He eventually
settled down and the test was completed.

When we got home, the doctor called us with the news. She
actually did not want to tell me over the phone, but there was NO way I was
going to wait until tomorrow. Needless to say, Peter and I are devastated. As you
know, I follow the story of Sammie, a young teen with osteosarcoma in
California. She too is dying from this hateful disease, and I always marvel how
her family is managing and supporting Sammie. I always feared that Mattie was
going to die because of the severity of his illness, but to some extent I lived
with some hope. Today the hope within me is dead. I do not know how Peter and I
will handle Mattie's disease progression and pain, nor do I know how you live
without your child? It goes against the laws of nature to see your child suffer
and die before you. Part of me is in shock and not in touch with my emotions
yet. Which makes writing tonight very difficult.

Peter and I spent the evening sitting in silence and
occasionally walking around. Caring for Mattie tonight was truly challenging,
since our minds and hearts are racing. Mattie doesn't know about his disease
progression. I haven't figured out how to proceed with that, so for now, I
would appreciate this not be discussed around Mattie. After all, he gave the
fight of his life this year, and now was supposed to be the recovery time. In
fact, today, he told me he misses walking, and wants to walk again. This whole
day is heart breaking, and I can't get over all we put Mattie through just to
get to the point which we most feared. The words of Sloan Kettering come back
to haunt me, as they always will. Sloan felt that Mattie's disease should NOT
be aggressively treated since he was most likely going to die. Funny, how I
thought that perhaps all our efforts could change the course of Mattie's
future. What I have learned through all of this is we humans control very
little. We only delude ourselves into this false complacency.

August 4, 2014

Monday, August 4, 2014Tonight's picture was taken on July 31 of 2009. Mattie was in the oncology clinic of Georgetown Hospital. Behind him was his buddy, Maya! Maya was the only friend close to his age that he related to at the hospital, all the rest of his buddies were much older than he was! Sitting right next to Mattie was Anna, Mattie's physical therapist. Anna tried all sorts of activities and games to get Mattie to use his limbs. Especially his right leg which was very weak and had atrophied. I am showing you this photo tonight because in a way, despite fighting cancer, even we were ignorant at that very moment in time. For only six days after this photo was taken (on August 5th) did we learn that Mattie's cancer had metastasized throughout his body. Amazing how your life can change in just a matter of days. Quote of the day: There are three needs of the griever: to find the words for the loss, to say the words aloud and to know that they have been heard. ~ Victoria Alexander

I have been attached to a computer today and generated three more pages to this chapter I am writing! Somehow that feels like I wrote a saga today. It is getting a section started that is always the hardiest for me. But I did it! So I am a bit brain dead this evening. My friend Charlie sent me tonight's quote and as soon as I read it, I LOVED it! It is hard to imagine that another August 5th is fast approaching. A day Peter and I will never forget. I remember sitting in the hospital's rose garden with Mattie and dealing with the news of Mattie's terminal diagnosis. I will share that story with you tomorrow evening. For now I am signing off for the day! I couldn't agree more with Alexander's quote..... the griever definitely needs to find the words for loss and to know that one's message is being heard and I would even add understood!

August 3, 2014

Sunday, August 3, 2014Tonight's picture was taken in September of 2008. I remember this moment in time like it were yesterday. We snapped this photo in the FAO Schwartz store in Manhattan. We took Mattie to NYC to visit Memorial Sloan Kettering for a cancer consultation and to also determine whether he qualified for an experimental immunotherapy trial. Between hospital visits, we tried to do kid friendly things with Mattie. As you can see Mattie posed for a photo in front of a huge display of Lego figures. Naturally! Mattie was an enormous Lego fan. He practically built every Lego set on the market in 2008 and 2009, while he was battling cancer. Lego was our form of therapy and it helped all three of us, manage and cope during times of horrific stress and trauma.Quote of the day: Flowers are those little colorful beacons of the sun from which we get sunshine when dark, somber skies blanket our thoughts. ~ Dodinsky

Peter and I spent some time outside today in our garden as well as just out and about in general. Tomorrow will be a writing day for me at home, so a change of scenery was necessary! The colors within our garden bring me great joy and considering I am spending a lot of time at home this summer, I am so happy to have this space! I am in love with petunias! Peter tolerates them, they aren't his favorite color though! But he has gotten used to the fact that there are some flowers which I deem as "happy" flowers and therefore my garden must always have them in it! Petunias are one of them. Next to the petunias you will notice a small butterfly wind chime. This chime was given to me by Mattie many years ago, when he was healthy! He went out one weekend with Peter, and when he came home apparently he brought me a gift that he found for me while shopping at Eckerd (which is like CVS). This butterfly chime has been in this same location since Mattie gave it to me.... through the snow, rain, and sun!

This year we planted portulacas or moss roses! Typically these are used a ground cover, but I decided to plant them in our flower boxes! They have been stunning producers all summer long! Peter loves them because the flowers open up with the sun, and close up in the evening. Meanwhile the bees simply can't get enough of these flowers by day! We are a very popular stop!

Though we do not have actual land and dirt, everything is in a box, we make very good use of our garden space. We have neighbors who can look right into our garden and we have inspired several around us to try to garden themselves! We are in the heart of the city and therefore gardening is not the pass time of most people. We are rare! But what I do notice is birds know all about us. They visit us and perch in our garden! We have a resident hummingbird who visits us, an orchard oriole (who is a bright yellow bird and gorgeous), many other birds, butterflies, and without a doubt my resident mourning doves who like to sit on Mattie's window sill and coo at me each day.

This is the White Ginger Butterfly Lily blossom that is starting to develop! My faithful readers may recall that we brought this plant back from the Elizabethan Gardens in the Outer Banks in June! We have been assured that this fragrance from this lily is breathtaking!!! We shall see.

I leave you tonight with my other happy flower...... the Gerber daisy! I have always loved gerbers! I have them in all colors on our deck. Right now the red ones are in bloom.

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.